Tag Archives: Chase

Chase On His MRI [VIDEO]

The sun is only hinting pink when I feel another presence on the edge of the living room.  This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.

Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fight cancer. What’s your superpower?”, he jumps onto the couch and snuggles close.  His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.

The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?…  They come with heartbreaking regularity and the answers are always the same.  In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.

In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink.  They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.

You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not.  My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good.  Always.

So today, hear Chase.  He’s about 24 hours away from a big MRI and he’s scared.  He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure.  This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it.  He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.

Moment by moment.

*Note: His last words are “I want Mrs. Schneider to pray for me.”  That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day.  Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI. 

Of Ending The Year With Our Foreheads On…

The year 2014 has less than a dozen hours left in it.  This year has seen us through many, many things and all along the way we’ve prayed for the strength to choose joy.  To that end -the joy part, or in this case, the hysterical laugh-until-you-cry part- I’ve compiled a series of actual status updates from my personal Facebook page; all of which were posted in 2014.  I chronicle these things (and have done so for some years) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears — so, as much as possible, we choose to laugh.  Many of the scenarios include personal hashtags: from the most common – #lifewithboys, to the most funny [playing off of our secret parenting fear that our children won’t get college scholarships] #notscholarshipmaterial, to a mini-series from our first family vacation for a wedding less than 48 hours before the October MRI#turningupinTulsa.  We’ve asked you to walk many hard things with us, so, for a brief moment, as we close 2014, enjoy our “normal“…

Note: due to the household including the addition of three boys in approximately three years, an abnormally large amount of the quotes have to do with bodily functions or bathrooms.  Consider yourself warned.

1.  “Don’t walk on the couch with a box over your head, Karsten.”  I just said this.

2.  My child just pledged allegiance ending in “...with liberty and crustless for all!”  We might be in trouble. #‎nationalismfail

3.  There wasn’t enough snow for snowmen, so the kids made snow heads. Can’t decide if the yard looks like Easter Island or a horror film.

4.  Someday I will understand the mysteries of the universe and be able to explain why there is a football in the shower.  Today isn’t that day.

5.  “Well I didn’t throw the toy at him…Uh, I dropped it and his head was just in the way!” #lifewithboys

6.  “Look, I don’t care if it IS the Death Star. You need to stop messing around and eat your orange.”

7.  “Uh, Mom? Uh, today…today, I’m going to uh, not spill my water three times at the table.” #‎aidangoals

8.  “Mom, I’m keeping this family picture so that when you die, I’ll remember you because you’re old and you’re probably going to die soon.”

9.  “I just came down from Kookie’s room to tell you I peed really, really big on the floor.”  The official moment you regret telling a child to come here if they want to talk to you.

10.  “Now we are engaged TO a great civil war…”: Aidan’s rendition of Gettysburg in which history lives, but prepositions take a hit.

11.  “Well, uh, Mom, I didn’t throw a Duplo at his head.  I threw the Duplo into the Duplo box and his head was in there because he was messing around.”

12.  “Mom, I didn’t trip him.  I was just standing there with my leg out and he, uh…fell over it.”

13.  “Graham crackers are for eating…not picking your nose!”  I need a raise.

14.  This is what Aidan does on his day off school.  Because when you jump off the toilet lid, you go big or go home… 

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15.  Bob: “Karsten, you need a shirt.“, Karsten: “Can I eat it?”

16.  As Karsten watches the Olympics, he yells “Come on, Bears!”…because that’s what you yell at a TV during a sporting event, right?

17.  Darcy: “Mom, Karsten’s being a disastrophe.” Grammar takes a backseat to conflict resolution.

18.  Early morning questions: “Hey Mooooom?! When I’m 60 or 29, can I pleeease watch ‘The Battle of Helm’s Deep’?” #‎lifewithaidan

19.  Mom Log, 7:09am: Boy enters with teeth marks in forehead and another boy close behind, screaming “It was an ‘askident’!”  This should be good.

20.  “Yes, he shouldn’t have licked your books, but you should never sit in somebody’s face!”  This is how “reading time” goes down.  Real talk.

21.  “I’m sorry, Aidan, but ‘Hey, look! There’s a giant hamburger falling from the sky!’ is not a viable conclusion to your class presentation on the history of Legos.”

22.  Chase and Karsten are arguing about whether “Alligator” starts with “B” or “C“.  This should go well.  And by “this“, I mean the next twenty years.

23.  “If you ever get the kitchen stool and climb onto the counter and drop the watermelon to the ground again…”  Well, that was a first.

24.  “Mom! I learned how to sort all the laundry and now I know from everything into which thing it should be sorted into.”  Next lesson?  Grammar.

25.  “Mom, if you let me have a cell phone when I’m in college, I’ll totally text you, but first, you’ll have to tell me how to spell ‘good’ so that I can tell you that I am good.” #‎lifewithaidan #‎notscholarahipmaterial

26.  “Bapa, you never played hockey, but Grammie can still put you in the penalty box, right?” #‎lifewithaidan

27.  And then the training sesh ended with the lesson: “…and that’s why you never run with an anesthesia mask over your face.”

28.  Me: Do you know who the president was during World War 2?Aidan: Abraham Lincoln?, Darcy: Who is the guy with the horse in the picture in the hallway? (George Washington), Me: I’ll give you a *major* hint…it was a Roosevelt. Which Roosevelt?, Aidan: “Oh, oh!! It was John! John Roosevelt!!”  #‎historyfail #‎notscholarshipmaterial

29.  Somebody found the medical supply cabinet… #‎trouble

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30.  “Well, Mom, *this* is why you had a daughter…because I’m always right.”

31.  “Kookie, you be Dark Vader and I’ll be Fran Cello, okay?”  May the force (and the knowledge of actual Star Wars characters) be with you, my boys.

32.  This morning, Aidan informed me that he could sneeze in Spanish.  So glad we can check that off the list of needed life skills…

33.  That time Aidan walked into a dining room chair and split his eyelid open…again.

34.  That moment you’ve been in hold forever with the US Postal Service and they finally ask you to say a command and all the phone computer picks up in the silence is the sound of the 2 year old standing next to you saying: “I have poop, Mom.”

35.  Darcy is reviewing family members’ names with Chase: “Uncle Dave , Aunt Meg , Captain America…”  Say what??

36.  “But you NEVER said I COULDN’T throw a chair!”  Helloooooo, Monday…

37.  Family pictures at the horse farm…, Grandma: “Aidan, did you tell your mom about your experience in the barn?”, Aidan: “I touched a horse!”, Grandma: “…and what else did you touch?”, Aidan [hanging his head]: “Oh yeah… I toucheded the electric fence too.” #lifewithboys

38.  “Do not drop your dinner plate on the floor for the sole purpose of doing an air guitar with your leg!” — parenting with Bob Ewoldt

39.  “Um…Mom? How old will I be when I’m 25?” -Aidan #‎notscholarshipmaterial

40.  “Hey, Mom? When Auntie Meg has her baby, can I burp ‘Rock-a-bye Baby’ to it? I promise to burp in English!” -Aidan

41.  Let me be clear about something…just because I never specifically said “Hey, don’t take the cap off the milk carton, put your mouth around it, and blow into the opening.” does NOT mean it’s an acceptable breakfast table activity. #‎lifewithboys

42.  That oddly poetic moment when the coffee you’re about to make becomes that much more necessary to your day… 

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43.  “Aidan, tonight is your first night in Sparks, and you should be happy about that, and I know that you’re a lot shorter than most of the other kids, but you should try to have fun, and it’s okay, and you’ll grow up some day.”  Older sister pep talks are the best.

44.  I just walked into a flooded bathroom and two guilty little boys who informed me that it had happened because one was “President Business” and the other was “The Piece of Resistance”.  Everything is awesome.  So awesome.

45.  One of my children really knows the meaning of the phrase “Go big or go home”.  In other, totally unrelated news, anybody have a failsafe recipe for getting black Sharpie permanent marker out of anything and everything…hypothetically speaking??

46.  As we discussed today’s [Columbus Day] historical significance…, Aidan: “Mom what language do they speak in Spain?”, Me: “Spanish. Why?”, Aidan: “No, I’m pretty sure that’s not right. There’s a Spain language.”, Me: “Yes, it’s called Spanish.”, Aidan: “No, it’s a [emphasis] Spain language…” #notscholarshipmaterial

47.  “Mom! Come quick! The boys put toys in the toilet and Chase is telling Kookie to flush them!!”  Thanks for the sucker punch, Thursday. #‎lifewithboys

48.  6:49AM – Chase gets mad at Aunt Carrie for possibly not sharing her wedding cake with him…in two days. Aidan asks when we are going to cross the Mississippi Ocean. #turningupinTulsa

49.  12:20PM – stopped for lunch in a food joint crowded with service people in uniform and while Karsten pointed and called them “Heroes” and we had a patriotic moment, Chase took a swig of the pepper shaker. #‎turningupinTulsa

50.  1:39PM – pulled out the brand new, educationally promising coloring books detailing things like “Explorers of North America”.  Gave myself a pat on the back for thoughtful parenting.  Listened to weeping and gnashing of teeth because Magellan isn’t Spider-Man. #turningupinTulsa

51.  3:47PM – left Mo for “The Sooner State” and discovered pieces of blue crayon all around Karsten’s chair.  I was informed it had been eaten because it was blue.  Having been on the road for 12 hours, I deemed this an acceptable explanation. #‎turningupinTulsa

52.  8:00PM – Aidan starts doing handstands off the hotel wall.  Discussion of appropriate hotel behavior ensues, the finer points of which may include parents lack of knowledge on the nearest ER. #‎turningupinTulsa

53.  6:42AM – After she let us know she woke up early to “relax on vacation”; we had a lengthy discussion with Darcy on “the wedding party” being a group of people rather then an event.  It went something like the famed “Who’s On First?” sketch. #‎turningupinTulsa

54.  9:05PM – Chase vows to grow up and marry Aunt Carrie.  Aidan vows to grow up and marry Darcy.  Time for the first “Why you can’t marry your sister” conversation…also the “Why you can’t marry your already-married aunt” conversation.  Good talk, good talk.

55.  1:18PM – Tried the educational coloring books again.  Got asked if I had a butter churn when I was little.  Education is not my friend this weekend. #‎turningupinTulsa

56.  Some are born great, some achieve greatness, some have greatness thrust upon them, and still others chuck the whole battle for a peanut butter sandwich. #‎lifewithboys

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57.  “Mom! I got super frustrated and totally freaked out and flushed my clothes down the toilet! …but then I took them out again and they’re on the bathroom floor. Is that okay?”

58.  [later the same day as the clothes flushing]  In this house, to have one gross, bathroom-related Facebook status per day is pretty standard. To have TWO gross bathroom-related updates in a single day is pretty amazing…even for the Ewoldt boys. Karsten, for filling the sink with water and “painting” the bathroom with the toilet brush… This one’s for you.

59.  Just because I never *explicitly* said “Hey, don’t take graham crackers and crush them with a hammer on the living room table.” doesn’t mean it wasn’t implied.

60.  Bob: “So children, what did you learn in Sunday School today?“, Aidan: “Hey! Do you guys know how to do arm farts?” #lifewithboys

61.  I shook the freshly delivered Amazon box [full of Legos] to give the December boys a birthday present hint today.  Aidan’s guess?  A box of sweaters.

62.  So, apparently, when you hear “Hey Mom! Come quick! Chasey’s all tied up with tape!”, it could literally mean that Chasey is indeed all tied up with tape.  In other news, the 6-year-old just had his taping privileges revoked for life.

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63.  “It’s okay, Mom… I only carry dishes while walking backwards with my eyes open and I’m very careful.”

64.  “Mom, we’re really sorry for breaking your ironing board, but now that it isn’t flat anymore, it’s makes a really good slide. Is that okay?” #lifewithboys

65.  Bob: “…and that’s the story of the gospel and our advent reading for tonight…any questions?”Aidan: “Yes! Why don’t we do piñatas for birthdays??” #‎stayontarget

66.  Grief counseling for small boys in traumatic circumstances: “Son, if you insist on bench-pressing a full bottle of ketchup over your head, things like this are likely to happen…”

67.  Without a doubt, the best bedtime excuse I’ve heard in a long time… “But Mom, I can’t go to sleep without my forehead on.”

Goodnight and goodbye, dear old 2014…

Moment by moment.

The lines have fallen for me in pleasant places;
    indeed, I have a beautiful inheritance.  Psalm 16:6

12.12.14

“Mom? Are you awake?”  The quiet voice came into the dark room from the silhouette of a fuzzy head in the hall light.  “Mom?  It’s me.  I just came to tell you it’s my birthday.  I’m five today and I’m going to open presents and…and…what am I going to do today?”

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Some days, he might need to be reminded of what you do on a birthday as the scars present their challenges, but he didn’t need help remembering that he’s here and he’s five.  And neither do I.

December 12, 2012

December 12, 2012

As I watch him open presents and I frost his cake, I find myself wanting to savor every second lest I never have graduations, weddings, and all those things that come with living long years.

Yet, as the fuzzy head tucked under my chin  and the downy quilt early in the dark morning hours, I could hear his smile in the shadows and that colors the canvas of the day.  The smile sounds spoke to my heart again: Chase chooses joy.  Always joy.

December 12, 2013

December 12, 2013

“Mom?” His voice across the breakfast table; “why are you crying, Mom?  I didn’t die of the cancer.  I’m five!”  And I wonder in my heart how such an old soul can be only five years young.  Always joy.

“Let’s just start this fight, and then we’ll get him through radiation, and then we’ll hopefully get him to age three, and then four, and then five…”  The doctor’s words always remind on this twelfth day of the last month.  Five.  The highest number listed in that year-by-year hope around the first conference table and diagnosis.

Today, my, precious, stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army Chase turns five with great joy.

We never thought we’d be here ever… and now we’re here.

God is good.

~MbM~

December 12, 2014

December 12, 2014

 

 

Today

Today, I walked into a huge medical facility bay and stared down a gigantic white truck structure.  The MRI.   

Today, I watched my loving husband carry my darling son up into the structure as he spoke calmly and quietly, and Chase, red-faced and teary, clung to him and cried that he couldn’t…just couldn’t…do this right now.

Today, I stood in the bay as only one parent could go inside with Chase, and my heart ripped just a tiny bit at the sound of his screams and then it was silent but for the pounding of the machine.  And I would learn later that though he screamed in the room, the minute the scan started, he became peaceful and still and stayed still for the whole test.

Today, as I held my breath and prayed for Chase in the sound of the machine, a man came up and introduced himself – the husband of a beloved proton radiation nurse who had cared for Chase nearly two years prior – what a small, beautiful world it is some days.

Today, I watched Chun, the camera man (because yes, we have a camera crew here with us now – so much more on that some day soon) peer around the corner of the machine and flash me the “thumbs up” – Chase was okay and he was done.  He did it!

Today, Chase descended out of the gigantic white structure, held his arms out to me and shouted “Mom!  You came back to me!  I did it and I was SO brave!!”

Today, we – Bob, Chase, the camera crew, a friend from the hospital, and me – we all waited in quiet anticipation to talk to the neurosurgeon.

Today, we all stood in the small exam room to hear that the growths, though changed and grown a little more, are considered stable.

Today, we talked of movies, and keeping up with small children and their energy as Chase went through the paces of touching his nose and myriad of other normal things that may not always come easily to him and Dr. Alden knows this and watches out for him.

Today, we heard that we get to wait to look again until January and enjoy our holidays and that we don’t need to think about biopsies or treatments right now.

Today, we heard that January is most certainly a necessity and that at least one of the growing places on the MRI is still a concern.

Today, we talked about nobody having all the answers and how frustrating it is when we ask and the doctors long to reassure with decades of concrete research and can’t.

Today, we were reminded that if we see any, absolutely any changes in Chase, we need to report them immediately.

Today, we chafed against the wait again and found our spirits wanting.

Today, we were given the day, and we’ll take it…

…moment by moment.

“We were made to run through fields of forever, singing songs to our Savior and King.
So let us remember this life we’re living is just the beginning of this glorious unfolding.
We will watch and see and we will be amazed if we just keep on believing the story is so far from over and hold on to every promise God has made to us…
We’ll see the glorious unfolding.”

Steven Curtis Chapman

Waiting for the neurosurgeon and mildly questioning Dad's ability to assemble a Transformer...

Waiting for the neurosurgeon and mildly questioning Dad’s ability to assemble a Transformer…

Giving Thanks

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Last year and this year too, we take a moment to reflect…

This Wednesday in 2012, Chase was deep into radiation in addition to his chemo therapy and was staying in the hospital. He was weak and his counts were very low, but he was stable and so, late in the afternoon of this Wednesday, I held his weak and white body by the window and stared out at the lake, shielding his face – his eyelids covered in scabs from where daily anesthesia tape had ripped the tender skin – and prayed that they would let us go home for Thanksgiving.  And then Dr. Goldman entered the room (as only he can enter a room) and told us to go.  And we went.

Two years later, we are thankful for so many things and our darling Chase is still with us to celebrate.

Giving thanks… Moment by moment.

“My heart is filled with thankfulness
To Him who walks beside;
Who floods my weaknesses with strength
And causes fears to fly;
Whose ev’ry promise is enough
For ev’ry step I take,
Sustaining me with arms of love
And crowning me with grace.” [Getty, Townend]

The Second Year

Tuesday, July 31, 2012…

Two Years… Two whole years since the early morning panic gave way to a living nightmare on the day Chase was diagnosed.

What struck me most as I looked through the pictures and memories is that life can feel complicated now, and yet, as I look back over the last year and see such crazy hard times, I realize that I’m apt to forget what it looked like in the shadow of whatever the here and now happens to hold.  I can tend to see Chase’s deficits and struggles and not realize how healthy and robust he is now compared to the emaciated waif that was.   The truth is that much has changed.  The truth is also that there are many uncertainties ahead.  The truth is that God’s goodness and faithfulness to us have never and will never change.  And Chase is still living and breathing with us two whole years later.

We’ve spent many days listening to Rend Collective’s newest album.  Our family’s favorite song is “My Lighthouse” and I truly can’t think of better words to sum the year…the two years…or, the lifetime:

In my wrestling and in my doubts
In my failures You won’t walk out
Your great love will lead me through
You are the peace in my troubled sea

In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea

My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise, 
You will carry me safe to shore 
Safe to shore

I won’t fear what tomorrow brings
With each morning I’ll rise and sing
My God’s love will lead me through
You are the peace in my troubled sea

Fire before us, You’re the brightest
You will lead us through the storm

Even if we know nothing of what lies before us (and we don’t), we can look back and see the joy in so many ways.

Trusting He will lead us through the storm… moment by moment.

**Look back with us and find joy…**

To Channel The Fight…Again

Spring EEG prep

Spring EEG prep

April 11, 2014

We sat in the room for almost two hours and dialogued on how the brain works.  Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions.  The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time.  Marvelous and scary.

Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course.  We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself.  Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.

[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything.  This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]


May 2, 2014

Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication.  It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!

We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand.  Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two.  The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…

We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.

Moment by moment.

Hear me, O God, when I cry; listen to my prayer. You are the One I will call when pushed to the edge, when my heart is faint. Shoulder me to the rock above me. For You are my protection, an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings.  Psalm 61:1-4 (The Voice)

Taking a moment...

Taking a moment…

On The Unknown Road

The cold snapped in the air as the sun shone distant and too bright through the windshield of the car as we traveled along the road.  Chase’s first day of therapies.  A new building, new people, new things to be learned…the start of a new chapter.  And with the new, came the old and familiar: the fear of the unknown and the question – what lies ahead?  Always that question.

Chase’s high voice pierced the questions gripping my mind like my hands holding the steering wheel.  photo 2 (1)“Mommy? Where are we?  This is not the road to my hospital.”  For this is how Chase tells direction.  There is the road that leads to his hospital and then there is every other road ever made.  I answered and assured him that this road was a good road and that it was the way to his new therapy – therapy that would help him grow strong.

Silence followed for a brief second as he processed what he’d heard.  Then; “But Mom, are we late?”

“No, Chase.  We aren’t late.  We are right on time.”

Another moment of silence, then his voice again, this time with anger, “But Mom, this isn’t the road and we’re late!”

Steeling myself for the familiar exercise of reasoning with the irrational; I responded: “Chase, this is the road and we are not late.”  I received nothing but an angry growl and the reiteration that I was in error.

How many times would I need to speak truth to him before he heard?  

Finally, this; “Chase, do you trust me?  I know this road and I can see the clock. I know where we’re going and I know that we’re not late.  You don’t know this road, but I do.  I’ve driven on it before and I know where it goes.  Chase, you’ll just have to trust me.”

The petulant retort; “Mom, I can’t trust you because I cannot see the road and I cannot see the clock.  You can; but I cannot.”  

Suddenly, his voice was mine….mine to my Creator who speaks truth to me and calms the questions and fears at every turn.  He tells me that even though I don’t know the road, He does.  He knows where it goes and what’s along the way.  He knows the timing of it and how it will take me to places that will be hard but will make me stronger.  And I sit, petulant child that I am, and question trusting Him because I don’t know what He knows and somehow, in my small heart and mind, that makes Him seem less good and my fears seem more justified.

In that moment, that silly short moment of driving across the city, in the child voice from the back seat, I was reminded how good He is to me and that I don’t have to know what lies ahead to trust and follow.

Moment by moment.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

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Stable

In pre op waiting for the MRI to be available so Chase could proceed with anesthesia

In pre op waiting for the MRI to be available so Chase could proceed with anesthesia

After a very long day that included an inner ear procedure, waiting over an hour for the MRI, almost three hours under anesthesia, and a painful peripheral IV in the arm (instead of accessing Chase’s port), we received an early, unofficial word from the hospital last night: Chase’s MRI results were still being read, but there was no evidence of new tumor growth.  However, there was still a question about the areas of fluid retention and cavernomas (effects of surgery and radiation)…

Removing the painful IV

Removing the painful IV

This morning, we received the second and final call.  The official word is “stable” on all fronts!

There may have been some very minor changes to the cavernomas, but nothing of concern at this point and the areas of fluid are virtually unchanged.  We will have the chance to view the MRI and discuss all of this more in depth next week with Chase’s neuro-oncologist and his neurosurgeon in his routine follow ups.

Taking vitals in post op recovery - and getting to eat for the first time in 9 hours!

Taking vitals in post op recovery – and getting to eat for the first time in 9 hours!

Praising God in awe.   Some days, I still can’t believe Chase has survived 21 months after an advanced AT/RT diagnosis.

Thank you again for your prayer and encouragement as we take this…

Moment by moment.

In the car, on the way home. A long day for a very brave boy.

In the car, on the way home. A long day for a very brave boy.

Open Hands

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The shadow has descended again and I’ve found myself unable to write because of it.  Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.

Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI.  I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known.  However, today, I was reminded to open my hands.  To relinquish again the dread of the unknown to the One who knows.

So, tonight, I finally sit and write.  I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long.  I needed this reminder that Chase is not ours to keep.  In fact, none of our precious littles are.  They are our entrusted treasures and we are their stewards.  We’ve gathered them around us in front of the two doors and we wait… with open hands.

Moment by moment. 

The earth is the Lord’s, and everything in it, the world, and all who live in it.  Psalm 24:1 [NIV]